Hamilton, R. J. (2008, March). What is brain injury? Why should I be interested? What can I do about it? Based on a program presented at the ACA Annual Conference & Exhibition, Honolulu, HI. Retrieved June 27, 2008, from http://counselingoutfitters.com/vistas/vistas08/Hamilton.htm
What is Brain Injury? Why Should I Be Interested? What Can I Do About It?
Robert J. HamiltonHamilton, Robert J. (MS, NCC, LPC, CRC, CBIS) is the Education Chair of the Brain Injury Association of Texas, a member of the Texas Traumatic Brain Injury Advisory Council, and a consultant to the US Health Resources and Service Administration, Child and Maternal Care Division. His interests are brain injury, PTSD and abuse diagnosis, treatment and education. He is a former aerospace engineer, professor/researcher at Purdue University and University of Illinois, and survivor of a “severe” brain injury.
Based on a program presented at the ACA Annual Conference & Exhibition, March 26-30, 2008, Honolulu, HI.
The Problem
Brain Injury (BI) is a critically important, but generally unrecognized, factor in the United States and many other countries that costs billions of dollars, disrupts millions of families and relationships, and causes countless heartaches. Consider these statistics on only one form of brain injury, traumatic brain injury (TBI). Each year, on average 1.4 million people in the United States sustain a traumatic brain injury – or approximately 4000 people each day. Of these, 50,000 die, 235,000 are hospitalized and 1.1 million are treated and released from an emergency department (Langlois, Rutland-Brown & Thomas, 2006). At least 5.3 million Americans – 2% of the U.S. population - are living with a TBI-related disability (Thurman, Alverson, Dunn, Guerrero & Sniezek, 1999). Direct medical costs and indirect costs such as lost productivity total an estimated $60 billion in the United States in 2000 (Finkelstein, Corso, Miller & associates, 2006). An estimated 1.6-3.8 million sports- and recreation-related concussions occur in the United States each year (Langlois, Rutland-Brown & Wald, 2006). Of the more than two million people currently residing in U.S. prisons and jails, the TBI prevalence rate is reported to be 3-10 times that of the general US population (CDC, 2007). To put a perspective on these numbers, compare TBI with more commonly known and recognized health issues. There were in 2001, 176,300 new breast cancer cases, 43,700 of which died (ACS, 1999), 10,400 estimated new diagnoses of Multiple Sclerosis (NMSS. 2001), 38,079 new AIDS/HIV cases and 16,980 deaths (Glynn, Rhodes, 2007), 11,000 new traumatic spinal cord cases and more than 190,000 individuals living in the US with paralysis as a result of spinal cord injuries (NSCISC, 2004). Since 2001 there have been changes in yearly diagnoses of approximately –3% to +13% and a decrease in deaths in all the categories listed above. The only CDC health or disability category containing more individuals than traumatic brain injury is mental illness, which includes many individuals with brain injuries that are diagnosed with DSM Axis I and II personality and psychological disorders.
There are a number of factors that make brain injury the hidden disability: Since the above statistics require hospitalization and a diagnosis of brain injury, the actual number of people with TBI (or other brain injury) is unknown but is suspected to be much higher. Brain injury is a “relatively new” medical diagnostic category. Until fairly recently, a large percentage of injured persons died - most survivors were considered psychiatric or social problems and were locked up in mental asylums and prisons. Brain injury is often hidden by more serious physical injuries and post-injury behavioral changes are considered psychological or emotional issues rather than emanating from physical damage to the brain. In a similar manner, co-occurring TBI, substance abuse and deteriorating health occur in a significant portion of survivors. Deficits seen are often attributed to health and substance abuse causes rather than brain injury (Corrigan, Bogner, Lamb-Hart & Sivak-Sears, 2003). Significant brain injury can occur with little or no external physical damage and no loss of consciousness (i.e. a minor bump on the head or fall). Post- brain injury sequelae may not show up for periods as long as weeks, months or even years following injury, and are then not thought of as being associated with the initial injury (this is particularly true with children). There are many confusing and overlapping definitions that include brain injury and many separate organizations, each with its own agenda, addressing various brain injury issues with little coordination between organizations. There is no commonly used medical diagnostic device that will reveal the vast majority of mild to moderate brain injuries. However, a ”no indication of brain injury” (even when using a diagnostic procedure, such as MRI or CAT scan, that does not show most brain injury) rules out brain injury for most professionals and laypersons. Observed post injury behavior can fall into any Axis I or II Disorder of the DSM, often resulting in a misdiagnosis. Much of what we know about the brain has been learned in the last decade since the advent of functional MRI and SPECT imagery techniques, where the brain’s metabolism can be observed in real-time during cognitive processes. Recent studies have greatly modified earlier beliefs and teachings about the operation of the brain, brain injury and rehabilitation potential.
What is Brain Injury?
This question is not easily answered because there are many definitions of brain injury, several overlapping with other disorder definitions, and a general confusion about brain injury overall. Traumatic brain injury is defined as a blow or jolt to the head or a penetrating head injury that disrupts the functions of the brain (DHHS, 1998). The definition with the largest scope is Acquired Brain Injury (ABI) – loosely meaning any brain injury acquired after birth. This includes Traumatic Brain Injury (TBI), head injury (HI), open head injury, closed head injury and brain insult. However, it is not as simple as that. ABI usually excludes brain injury acquired prior to, during or shortly after birth, due to disease, medical intervention, toxic exposure, psychological trauma, aging, or occurring over a long period of time. It also excludes congenital/genetic insults, drug and alcohol abuse and mental illness. TBI is also included in the definitions of learning disability, learning disorder and developmental disability further masking the total number of brain injuries. Anoxic and other brain injuries acquired during birth are often treated as and labeled cerebral palsy. Due to a lack of diagnostic imagery for most brain injury, diagnosis of the presence or absence of injury is presently restricted to observed behavior. The best accepted definition of brain injury is “any injury to the brain that causes physical, perceptual, cognitive and/or emotional/behavioral problems”. In an attempt to simplify the definition of brain injury and provide a relatively inexpensive, simple diagnostic tool, one proposed definition of brain injury has been “any event or series of events that causes a sudden and lasting state change in the EEG (brainwaves) that results in negative behavioral consequences”.
Despite the confusion about the definition of brain injury, some common injuries are clearly defined brain injuries. Concussion and any loss of consciousness, even if brief, are at least minor brain injuries. It is also important to realize that not all brain injuries result in obvious cognitive or emotional impairments, and that the significance of impairments may not be related to the severity (or lack of severity) of the initial physical injury. Identical physical injuries often have very different cognitive and emotional sequelae – so much depends upon the individual, their previous experiences and current environmental situation. Significant post-injury sequelae may not become apparent for some period following the initial injury, perhaps years in the case of children.
Why Should I Be Interested?
The professional specialists that deal with brain injury diagnosis and rehabilitation are neuropsychologists, trained and experienced working with survivors of brain injury. However, the vast majority of mild and moderate brain injury survivors do not seek, nor are they referred to, a neuropsychologist. Instead, if someone has post-brain injury difficulties or has a family member who acts differently following a brain injury, when they seek help it is usually with a general counselor who has not received any specific training or had experience dealing with the brain injured population. And without specific knowledge about brain injury, a diagnosis of brain injury is often not made.
The large number of survivors of brain injury means that a significant percentage of the clients that the average counselor sees in any given period may be survivors of brain injury and their deficits and issues may be directly related to a physical injury of the brain. But why should this make a difference to the therapy or pharmaceuticals recommended? To help answer this question lets look at some of the difficulties often present following brain injury and consider their impact on the counseling process. Although there may be large variations in degree, many of the following issues are present to some extent in many brain injury cases and can sabotage recovery.
- Poor memory, poor concentration (easily distracted), and lack of follow-through –instructions and expected actions (including taking medications) are seldom done correctly without supervision.
- Slowed mental processing, difficulty understanding abstract concepts, impaired decision making and easily confused – conversations and concepts need to be reduced in complexity, jargon eliminated, and presented in a clear and often repeated manner.
- Difficulty multi-tasking, changing thinking (stuck in one track), or egocentric thinking – often counseling work must be somewhat directive, at least with the giving of possibilities, and evaluation of thought processes and actions.
- Sensitivity to distractions, light and sound – the counselor must be aware of the environment and work to eliminate distracting factors in clients counseling and their lives.
- Changes in vision, hearing and sense of taste/touch, spatial disorientation, loss of sense of time and space, altered balance/coordination, and increased/decreased pain sensitivity – these difficulties can significantly impact counseling and follow-though.
- Extreme negative effects of stress on behavior and performance – right from the start, emphasis must be on the elimination of stressors, many of which emanate from the subconscious beliefs and experiences of the survivor. External stressors must be eliminated as much as possible and the client must receive continuous assistance in restructuring their thinking to their present reality and remaining calm, as uncontrolled stress will sabotage their recovery.
- Very slow and uneven recovery – It is a given that there will be uneven improvement and relapses and that it may take a long time for lessons learned in therapy to consistently be applied when needed in real life. The survivor may do well in some areas and very poorly in others and that this may vary drastically from day-to-day or hour-to-hour.
It is extremely important for the counselor to remember and to educate the survivor’s family and caregivers that NONE of the above are done deliberately! Regardless of how they seem, they are a function of injury to the brain and an interruption of mental processes. To expect a person with any significant brain injury to behave in a rational, non-emotional, or consistent manner is akin to asking a person with no legs to run a marathon without prosthesis. Although it generally cannot be seen, brain injury is a significant disability, perhaps the worst possible one in cases where one loses their memory and identity.
What About Drugs and Their Effects?
A few years ago “no drug on the market had been scientifically tested with a brain injury population”. To date there have been very few reliable large-scale studies. Also following a brain injury, the effects of drugs, including their side effects, can vary from one injured person to another. This means that, even more so than with other pharmaceuticals, post-brain injury drug effects and effectiveness is often a highly trial and error process. Even when successful, the effective uses of pharmacology are in pain, seizure, and depression management following brain injury and their long-term effectiveness is questionable. One of the biggest problems in the use of pharmaceuticals following brain injury is the use of older first and second generation medications. A very large percentage of survivors have limited or no medical insurance. This means that they generally receive these early, lower priced medications that often have significant side effects, especially over the long-term. It is important to also realize that during recovery it may be necessary to periodically evaluate and reduce (or titrate down) drug dosages to minimize side effects that could be damaging client improvements.